RESEARCH: Three quarters of haemophilia sufferers are living a life of pain and worry due to their condition

Shire Pharmaceuticals Limited today released results from a new UK patient survey which showed that three quarters of haemophilia sufferers are living a life of pain and worry due to their condition.

The release of these findings coincide with the start of the World Federation of Haemophilia congress, taking place in Glasgow this week, where leading experts are gathering to discuss the latest challenges and developments in haemophilia care.

Haemophilia is a largely hereditary condition where people experience longer-than-normal bleeding due to an absence or deficiency of clotting factors in their blood.

Shire’s “My Life With Haemophilia” survey found that the excessive bleeding associated with haemophilia impacts daily life for 93% of people, with 54% worrying about their next bleed, 53% saying they are in pain and 70% admitting they have to avoid physical activities, including sports and over half of respondents (54%) avoiding certain social events.

Unsurprisingly, the survey also revealed that 68% want to see additional types of treatments being more widely available. Furthermore, eight in ten people (80%) called for a greater understanding and wider discussion of haemophilia within the community, particularly in relation to educating friends, family and colleagues about their condition.

They also wanted to improve their own understanding of their care pathway, with 46% wishing to be informed enough to take a more active role in the decisions being made about their treatment and care. 67% said they would like more opportunities to meet & talk to others living with haemophilia and 39% said they would like more access to online support tools.